I'm scared for my dh. Please reassure me.

[CherryPie3]

My dh has crohns disease and has been suffering with a severe flare-up for the last 3 weeks. After 2 weeks of it he emailed his specialist as it wasn't improving as much or as fast as he'd like it to.
His specialist sent him for a sigmoidoscopy, which showed lots of inflamed areas and that he was definitely having a flare up. A bad one. :(

Because of the severity of it he was admitted to hospital, where he will stay until things calm down. The doctors have said Monday at the absolute earliest if things settle down. As of last night things were worse as his pulse was racing and his temperature very high, even after medication they were still too high.

He can't eat, his stomach and digestive system are rejecting anything that he swallows, drinks included, and he is rapidly losing weight. I'm scared he's gonna end up being fed by tubes if it carries on.

He had a ct scan on Wednesday (my birthday) which showed further affected areas which have never been affected before - his large bowel and some of his small bowel.

Doctors are throwing all kinds of treatment names around like steroid injections and infliximab infusions. I just don't have time to absorb one piece of information before theyre telling me about others.

I'm trying to juggle 3 kids (4,5 and 7m), the school runs and housework. "not enough hours in the day" is the most appropriate saying for me lately. The hospital itself is 15miles away and is costing a fortune in petrol, which I don't mind too much cos he's worth it and it's only money after all - I just don't have a lot of it. In 4 days it's cost me £60 in petrol, and it's only a 1.4 fiat grande punto.

Well done everyone who reads to the end, even if you don't post (and I wouldn't blame for reading and running). I guess I just needed to write it down somewhere. I don't even know what I want anyone to say.

Hi cherry, I am sorry what you and your husband are going through. First of all I would let the Dr's do their job and have faith that they are trying to do the right thing. I know how difficult it can be going back and forth to the hospital and also how expensive it can be. On top of that you have the kids - must be very hard on you at the moment. I don't really have any advice but I hope someone will offer to help you out or even take the kids for a little while so you can have a rest. xx

You poor thing - this is horrendous.

Do you have any kind of support: friends, family/ church?

Can anyone do a visit for you - i know you want to see him every day, but you need to conserve your strength and manage the DCs.

Would your DH be entitled to any kind of help? (Financial/disability etc)

Would your GP be able to communicate with the hospital and interpret all the "medicalese" for you?

Can't think of anything else ATM - just wanted to reply.

Crohns is such a horrible disease. I'm so sorry you and your DH are going through this. I have several friends who suffer from it. For the most part these big flare ups tend to be quite rare but i know how scared you must feel He's in the right place where the doctors can keep a close eye on him.

Thank you so much for your kind words, I can't tell you how much I appeciate it. :)

I know he's in the right place and I do have faith in the doctors. I'm lucky (unlucky?) that I am comfortable enough with them to ask them to dumb it down a little bit for me :). Which they usually do, if they're able - after having a chuckle at me firstof course :). I've told my dh that he can't come home until he's better cos theres no way the kids would let him rest here! He wants to come home today because it's an 'interesting football match' tomorrow - Chelsea/Liverpool? Strange as he's a Manchester United fan . Think I heard the name 'Torres' mentioned somewhere in his mutterings

3littlefrogs We are sharing visiting 'duties' although admittedly not willingly on my part but I need to remember that he has other family that want to see him too so I can't be selfish. I need to spend some more time with my 2 older children as I don't want them to think I don't have time for them. My little one comes with me anyway as I'm still breastfeeding him.
He did look into the disability side of benefits (had to push him a bit cos he's very proud) on the recommendation of his doctor but DWP rejected his claim. I've heard this is common with crohn's patients as the severity of the disease varies so much - almost makes me feel like they don't believe it tho.

Feel very sorry for dh as he's only 24! He has rheumatoid (SP?) arthritis so can barely walk sometimes, has a stressful job as a manager and sometimes I wonder how he copes when he's running round after our brood at home too.

His crohns has been in remission for the last 2 years, silly of us to hope it might stay that way.

Feels so good to talk about it! Thank you for this!! :)

This is so hard for you both. Do you have anyone who can help you with the practical things at home? Doing the shopping/laundry etc? Or just making an odd visit to your partner so that you can have a "night off".

I was back and forward for weeks to the hosspital for my Dad and I was shattered - and that was with just one child and DH at home to help me; so please look after yourself too.

Hiya starfish I'm sure my family would help with shopping and wahing etc but I'm a bit scared to ask! Well, not scared, maybe proud/shy? I don't want people to think I can't cope (even though I'm only barely coping). Think I'm just gonna order the shopping online and have it delivered on a morning when nothing else is happening! Seems easier, my laundry can wait...I'll just pop in what we need (school uniforms and bits) for now, this evening I'll get the lot done cos dh's parent's are visiting him, I'm going this afternoon instead.

I have to go now, my mum just called...she needs me...no rest for the wicked eh?

Thanks again everyone, I really really appreciate this!! xxxxx
:)

Hi Cherry.

Firstly, so sorry you're all having to cope with this, it's grim.

from a practical point of view - because I'm a bit all out of wise words at the moment sorry.

Try to scale back what 'needs' to be done to the bare essentials, prioritise feeding and keeping yourselves clean.

Definately online shopping is the way to go.

For what it's worth, try not to worry too much about 'tomorrow' or the day after that, just get through each day at moment.

Hope all goes well and your DH is sorted quickly.

Thank you Liza Thank you for posting and don't worry about wise words.
I completely agree with you on the making sure we are fed and clean! And we are :).

Ok I really have to go now....so addicted to mn! It's a 'safe' place to go to unload :)

Yes, order your shopping online, that will help a bit and it's quite easy. Its not silly of you to think about his remission period like that. With these autoimmune disorders its very hard to predict when they are going to show face. ( I am being tested myself at the moment for Hughes) and I know that I have had periods of terrible fatigue where I feel terrible and other times I am fine. I feel really sorry that your DH is just 24 and has to deal with this and yourself.
If you lived anywhere near North London, I would help you out!! :)
Do tell your family if you need anything done. I am sure they will jump at the chance to help, I know mine would and we are not a close family. x

Hope the flare up subsides asap and you can get DH home.
I would feel no shame or anything in directly asking for help. that is what family and friends are for.

Visiting rota -your DH will understand if you cannot go every day (but maybe you want to).

That is really tough for you. I hope you don't take this the wrong way, but you sound very young and it looks like this is really getting on top of you. Understandably.
IIWY, I would definitely ask your family for help. I know that I would do anything for my DD and hope that continues until she's left home and has a family of her own.
Good luck and very best wishes.

try not to be too proud to ask for help , your family will be happy you asked .
I hope your dh feels better soon and im sending you a hug .
good luck , ps you sound like a fantastic wife/mother your family is very lucky.

Hi everyone, and thanks again for this :)

Dh and I have agreed that I won't visit everyday and I will take turns with his parents. I'm quite relived as it was his idea. I almost fell asleep in his room yesterday afternoon! And I was starving, when I was there I realised that I hadn't eaten a proper meal since 11am the day before! I didn't feel hungry so it never occurred to me. Mum cooked for me last night, and fed the kids whilst I was at the hospital. She called me yesterday morning as she needed me to go shopping and she offered to help out - so I didn't need to ask, she knows me so well. She's offered to do my laundry for me :) bless her. I'm so grateful cos I never got chance to do it last night like I was hoping.

Dh is no better really, although he says he feels it - everything is still very there. The doctors have no idea what caused the sudden flare -up as all tests for infection have come back negative. They just don't know what to do with him. When I went to see him yesterday he was in a lot of pain with his stomach and his back, I took him some fruit in the hope that at least some of the goodness will stay in his system.

I feel like I can cope much better today, maybe cos my mums 'on board' now. I'm 26, really I should be able to cope anyway but still...

kreecher I didn't take that the wrong way, don't worry :) I suppose I am young, I just don't feel it sometimes.

MrsWhiskerson Thank you!!!! :).

Nettles I hope the testing brings good news for you! I just looked up Hughes and I have suggested to dh that he be tested for it as he has 8 out of 12 of the symptoms. It may be useless and the doctors may refuse but since their usual treatments for crohns are not working I can't see why not. Its only a blood test (apparently).

Have to run again, tis lunchtime and the children are looking at me with hungry eyes :)

xxxx

Hi Cherry, I don't know much about crohns so can't offer any good advice there but just wanted to say - remember you don't have to be perfect- doing your best is good enough.

It sounds tough for you all at the moment but you are battling on and thinking about the needs of your husband, your children and his family. That is above and beyond what many people would be managing to do. Be kind to yourself and accept help where ever it is offered.
I hope your DH starts to pick up a bit soon.

Thank you very much kingprawn :) xxx

Hi Cherry, how is your husband doing? and how are you today?

Hi there kingprawn, dh is still in hospital :(
He's picking up infections left right and centre :(

I'm doing ok tho, kind of fallen into a new routine which for the moment is really helping me fit everything in. My mum has buggered off to the seaside with her partner and just said to ask my sister for help. I asked my sister and she's 'busy' and just wants to borrow money (that I don't have)! Feel a bit abandoned by them but my brother has been great!!! Thank god someones interested :)

Anyhow I won't bore you with my family problems, they're just simply frustrating!! I thought they'd do what they could to help (as I would and have done for them). Nevermind, I'm coping without them.

Fingers crossed dh's doctors have some positive news today. We are currently awaiting results of a chest x-ray and also waiting to see if some new medication is working or not: they started him on steroids on Monday with the advice that it will either make him much better or much worse - and that is all they said. Never said how long he would be taking these steroids, or which bit they were aiming to make netter with them. I don't think they know what to do tbh. Dh seems to think they're gonna operate on him - god I hope it doesn't come to that!!! I'm literally terrified of surgery (god knows why I'd have done if I'd have needed c-sections with my dc's).

We are absolutely no wiser to finding out what caused the whole flare-up so we don't know how to prevent it happening again - the only thing we've learned is how much worse it's getting.

Thank you for your concern kingprawn I'm sorry I couldn't reply sooner :) xxxxx

Big development......5mins ago I got a text from dh saying he's being discharged today but he has to rest and remember to take his tablets everyday - all 12 of them.

I'm soooooooo excited xxxxxx

great news x

Really pleased to read your update Cherry, enjoy having him home!

Thanks :)

Although I love him being home he's not even any better!! The doctors said they really needed his room for another patient and so dh was discharged. I read his discharge papers too and they've said dh showed "remarkable improvement" from the steroids - they have made him worse up to now. He can't eat as his stomach is still rejecting food/drinks. He can't sleep. His crohns flare has not settled AT ALL!! If anything I would honestly say it is worse :(.

I hate the NHS. It seems the 'care' side of it has gone. I feel it has let dh down. They haven't even arranged to monitor him as an outpatient with the powerful medication he's been given.

Oh Cherry that's awful and just adds to the stress for you all. What would they do if you go back to A and E and say he's too ill to manage without proper medical support? You must be worried .. feel free to offload on here. x

Sorry to hear all you are gong through, my brother has UC (although having his colon removed hasn't helped so they now think crohn's) and was diagnosed at the same kind of age - he has been through hell and is mid-flare and has just had fistula surgery so I know how distressing it is.

My brother has had good support through his stoma nurse but if you aren't getting the information and care your dh needs maybe call the NACC for advice?

kingprawn I've considered taking him back to a&e but dh won't let me, he's even wanting to go into work tomorrow!! He feels guilty as he's only recently got this management position and he feels he's letting them down - utter rubbish of course! I've agreed to drive him to work (he can't drive again yet as too ill) tomorrow so he can have a word with his boss - I've advised him to get a sicknote to cover him.

I'd completely forgotten about the NACC! Yes I think I'll check out their website out and perhaps ring them. A friend of dh's has UC and has so much surgery it's unreal :(. She's in hospital now and usually is for about 30-40% of the year. :(. She played a big part in actually getting dh diagnosed as she introduced us to her specialist as dh had been waiting 6mths for an appointment with no sign. He took dh straight on, did his own tests and got him diagnosed within 2mths! He's awesome! Different doctors been dealing with his hospital stay tho...

I'm sorry about your brother muminbeds it's a shame they had to remove his colon before realising! I hope he gets the right treatment and improves very soon!!!

Thank you for your replies :). It's nice to have somewhere to come to say everything cos I think dh is getting sick of me whining about the NHS to him xxxxx

Sometimes you just have to accept that you are too ill for work . I think the very fact your DH feels bad about being off shows he's hard-working and no slacker, and i'm sure his boss will know that.